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Might I have lymphoedema?

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Rattles
Member

Re: Might I have lymphoedema?

Hi Lacuna,
I have just sent you a message! I had the shiny glove, which I used with the sigvaris sleeve. It didn't work for me as the swelling in the hand and fingers got worse. Even though I hated it at the time, its so much nicer than the class 1 jobst. As horrible as it looks though, it is improving the swelling. Its black-at least-and my work colleagues said that I should try and look at it as a kind of glamarous evening glove (umm??!)
If we meet, I can bring you what I have tried and you can see what I have at the moment. Like you, feel it would be good to share ideas and what has worked/not worked.
All the emphasis seems to be about prevention. Not about managing.
Rattles x

Lacuna
Member

Re: Might I have lymphoedema?

Hi Rattles

My custom-made glove is also Jobst-Elvarex and I think it is quite thick and not nice material. Not that I can wear it anyway. The off the shelf glove I have at the moment is Haddenham Microfine and the sleeve is Sigvaris. The glove is quite smooth and like lycra, whereas the sleeve is more like cotton. I don't like them being different materials as they don't match. I find that wearing the sleeve does sometimes seem to lead to more swelling in the back of my hand as it seems to have more compression than the glove, which isn't good as most of the swelling is in my hand anyway.

I agree it would be nice to keep in touch and support each other through this. I am on the forum quite a lot at the moment, but this section of the board is quite quiet. I live in London too, and would be happy to meet and have a coffee and chat. It is always good to know someone in a similar situation and offer ideas, or just offer support. I will PM you.

Lacuna x

Rattles
Member

Re: Might I have lymphoedema?

Hi Lacuna,
My garment was made-to-measure and its by Jobst - Elvarex. It is black and a class 1 compression garment. I have tried so many others. I started with a Sigvaris, which although I hated at the time, now feels like silk compared with the Jobst.
When I first went for MLD, I was told that because I was being seen so quickly we might get the lympodema to improve to the point where I would just need a thumb piece. At every point, I have lowered my expectation, I was faced with worse so what I have ended up with is so much worse than I ever imagined! I can't write or type and I feel disfigured. Many of the patients I see at the clinic are alot older than me (and I am no spring chicken at 43!) and its very demoralising. I have learnt that alot of this is trial and error and what works for one person may not work for another. I tried a seperate glove and sleeve (having the all in one is a real pain) but I just ended up with more swelling. Even with the all-in-one, I get swelling on the back of the hand which is a hard swelling but at least the swelling in my fingers has improved. I have just been given a class 2 glove to sleep in which is easier than the bandaging (which I learned to do). Do you mind me asking where you live Lacuna? I live in London.
It would be really nice to support each other through this as there is not much support, alot of emphasis on prevention, but not managing it, and although there are some knowldedgeable ladies on here, they don't seem to post often. I usually come on the forum at least once a week but I am back at work (another story) so not always very prompt. It would be really nice to keep in touch though.
Rattles x

Lacuna
Member

Re: Might I have lymphoedema?

Hi Rattles. Thank you so much for your kind response. It sounds like your situation is very similar to mine. Like you, my lymphoedema is in my fingers and hand and in my lower arm. If you don't mind me asking, what brand is your glove and sleeve? I think I need something like you have which starts at the base of my finger nails and ends at my arm pit. Do you have a glove and a sleeve or is it one-piece? The constant numbness in your thumb sounds terrible though.

I phoned the nurse who measured me for the glove and she said to give the glove a good stretch and try it again. I have done this, but it still doesn't fit and from the look of it, it never will. It really does look kind of odd and as if my fingers are all weirdly different in length, which they're not. So I'll have to call her again and get another appointment.

Rattles
Member

Re: Might I have lymphoedema?

Hello Lacuna,
Sorry you are having a bad time. Lymphodema is horrible. I have not come to terms with mine but I think I have been lucky to get a reasonably good service - even with this, I have lost count of the different garments/combinations I have tried.
It sounds as though you have had a made-to-measure glove? Privately? If yes, you need to go back to get it fitted and make sure it is correct (sorry, it is extra expense and yes it sucks). It should not make your fingers go blue!!
I have lymphodema in my fingers and hand, a little in my lower arm and nothing in my upper arm. A glove on its own did not work for me. I have a full glove/sleeve (uugh!). It begins at the base of my finger nails and ends at my am pit. I hate it but it works. At first my finger tips went numb.It felt very tight. I also have neuropathy so its a real issue for me. To combat it I was told to try and stretch the finger openings and dont make the mistake of pulling the fingers down, pull them up. Even now, I have almost constant numbness in my thumb, esp if I bend it (ie for typing!). I also use kinseo tape and was given a wrap, but I lost it on the bus on the way home (I have to ring and fess up!)
I have had a combination of private and NHS treatment. Like you, using private treatment until my NHS appointment came through. The NHS also inisted I come back to make sure the garments fit correctly and while it is clear I will be seen every 3 months, they have said I can ring them if I have any problems.
I have been really disappointed in the lack of support available.
If I can be of any help at all, just say.
Rattles

Lacuna
Member

Re: Might I have lymphoedema?

I just don’t know what to do. The gloves given to me by the NHS are too short in the fingers and make my fingers swell at the end. I phoned the nurse to tell her this she she told me I must be pulling them down too much. When I told her this wasn’t the case she said that I must have very long fingers, but she didn’t remember that as being the case. She never actually measured my fingers so how she would know I don’t know but I pointed out that yes, I do have long fingers. She asked me if I had received my custom-made glove I was measured for in my private appointment and I said no. She said was that because I hadn’t requested it?! No, I had requested it but it hadn’t arrived yet. She said that I should chase that up, that she was not going to measure me or give me another glove in the meantime and that while I was waiting I should decide whether I was better off with or without the gloves she had given me, but only I could decide that. And then she said she would see me in two months. And that was the end of the conversation. I thought she was quite rude; it’s not my fault that she didn’t measure my hand and that the gloves don’t fit and I only have a prescription for a custom-made glove because I arranged it myself.

So since then I have received my custom-made glove and it is does not really fit. It is tiny – far tighter than the extra small gloves off the shelf. It is so tight I worked up a sweat putting it on. On two of my fingers it goes right to the tips and on the other two it finishes halfway down the nails. It hurts the most on my thumb and it is so tight the tip of my thumb has turned blue. Actually, the tips of all my fingers have turned blue and feel numb. I don’t know what it is expected to feel like and without an appointment I can’t check whether wearing it is the right thing to do or making things worse. It’s incredibly uncomfortable, and slightly painful, and I am finding it very difficult to type, and almost impossible to use a mouse through the fabric. If the NHS nurse had told me to wait for my custom-made glove and get back to her if it didn’t fit me then fine, but she made it clear she would next be seeing me in two months. Given that I waited ten weeks for an appointment in the first place, and she gave me garments that didn’t fit, I don’t think this is a very good service. So I guess my choices are to go private again and wait for another custom glove to be made, put up with the pain with the one I am wearing or go without. I still can’t get my head round the fact that this is forever and I am going to have to wear this huge constricting glove and sleeve for the rest of my life. Thank you if you read through all this, I just find the lack of support for this from professionals overwhelming.

Lacuna
Member

Re: Might I have lymphoedema?

I feel exactly the same Miniegg I am hoping they will come up with a cure, although I'm not holding my breath. It totally sucks! It's good to know someone else feels the same although I wouldn't wish this on anyone.

I finally had my NHS appointment. The nurse said I have lymphoedema in my hand, wrist and lower arm, so will need sleeve and glove. She has ordered some for me in black. In the meantime she has given me a beige glove to wear, but it is not long enough in the fingers and it is making my fingers swell at the end. She said that that wouldn't happen, but it has. The one she has ordered is the same so it's not going to be any good. I suppose I will have to wait for my made-to-measure glove from my private appointment to arrive and hopefully that will fit properly.

I am supposed to carry a plastic glove with me and put it on when I need to wash my hands and use the bathroom. Which is fine at home but not so great at work and in public bathrooms. Feeling down at the moment.

Miniegg
Member

Re: Might I have lymphoedema?

Sounds awful I hope you get an appointment with a lymphodema nurse soon! I kno everything about it sucks I do spend alot if time worrying about it I'm just holding out for some magic cute in the future as I can't see how I'm supposed to live in sleavex the rest of my life! I think it's so easily dismissed by everyoThere'll medics when they see the sleeve are like oh so you have some lymphodema! How is that. I just want to say well actually it sucks its a constant reminder that I'm different, I worry about it getting worse, I worry about what to wear my life has changed forever and ur was a totally avoidable situation AHHHHHHHH rant over

Lacuna
Member

Re: Might I have lymphoedema?

Hi nic, thanks for your reply. It sounds like it has been hard for you to get used to the sleeve, I am glad you are able to go without it occasionally. I am hoping to try swimming myself, but at the moment I only have one nipple and am still tanned from radiotherapy and the thought of being in a swimming costume in public horrifies me.

I am totally fed up with my lymphoedema. I had another private appointment at the start of the year and was taped again with kinesio tape, which made absolutely no difference to my swelling. I was also referred to a physiotherapist which I have had to pay for, but the massage and exercises she gave me have also done nothing for the swelling. The nurse measured me for a glove, but my hand is too small for off-the-shelf so it has to be made in Germany and I am still waiting to receive it. The glove has to go right to the end of my fingertips! I dread to think what it is going to look like.

In the meantime the swelling has gotten worse in my hand and has spread to my lower arm, and I am worried the glove won't be suitable now as it won't cover enough of my arm. I also have a lot of pain in my arm and cannot stretch it out straight and struggle to do the exercises. I work at a computer and have to do a lot of typing and it makes the swelling much worse, I can feel my fingers throbbing now as I type. I also can't do my hobbies - I like to make jewellery and I have a fish tank but both activities make my hand swell.

I am annoyed because I went private precisely to avoid the swelling getting worse and to try and get it treated early, but nothing the nurse has suggested has helped and I don't feel it has been taken seriously. I've just wasted my time and money. I read somewhere that if it is caught early and treated and is mild it can be reversible, and I was secretly hoping that would happen for me, but I can see now that it won't. I have my NHS appointment next week and I hope they offer something that actually helps the swelling go down. I feel like my whole life has become about this at the moment.

Miniegg
Member

Re: Might I have lymphoedema?

I am so sorrbe veneer came back to this post!! How are u doing with everything now?? I was first told my arm was 11% which I was horrified by then 7% and most recently down to 3% I'm not going to lie it is gutting! I hate getting up then thinking about dressing and putting on the awful sleeve! The swelling itself is not noticeable to anyone that doesn't know so I ca. Be naugTom and go without when im with friends! iv recently gone back to work and find I front mind wearing it at work and because iv worn it for over 10 hours I can rip it off when I get home! I can then spend my evening sleeve free.
There are a number of things that I do for myself now that I couldn't do whilst having treatment like dry skin brushing, swimming and taking herbal supplements! You will not get told alot about it but detoxifying and drinking lots if water, ginger tea in my opinion makes a difference and makes me feel less helpless!

anyway I hope you get this, sorry I took so long
nic xx

Lacuna
Member

Re: Might I have lymphoedema?

Hi Nic, I am sorry to hear about your lymphoedema - how bad is it and how are you managing?
After getting tired of waiting for an NHS appointment I decided to go private. The nurse confirmed I have swelling in my hand and fingers, but said my arm seemed okay. She said that normally treatment would involve a glove, but they are unsightly, unhygienic, can make the swelling worse, and stop you being able to do things properly. So she tried some kinesio tape first on the back of my hand. After five days it was peeling off and didn't look too great and there was absolutely no difference to the swelling. So I am going back in the New Year to get fitted with the dreaded glove, which she has made sound awful. I did some housework today and my fingers have swollen even more. Meanwhile I am still waiting for my NHS appointment.

Miniegg
Member

Re: Might I have lymphoedema?

hi Lacuna, im 28 and developed lymphodema in feb this year if you want to get in touch send me a message,lots of love
nic

Lacuna
Member

Re: Might I have lymphoedema?

Thanks melinda287, it's really good to hear that you are now managing it quite well and it's not as bad as you thought it would be. How you say you felt is exactly how I have been feeling. I have been told I may have to wait up to 8 weeks for an appointment, which seems a long time. Everything I have read and been told prior to this emphasised the importance of getting treatment as quickly as possible, but apparently it is not considered urgent and so I will have to wait.

melinda287
Member

Re: Might I have lymphoedema?

I had all my lymph nodes removed in January and everything was fine until June when I noticed a very swollen hand, fingers and arm. I telephoned my breast nurse and she got me an appointment at the lymhadema clinic 2 weeks later. I was absolutly guttered when I realised I had lymhadema, in many ways it was as bad as being told I had cancer again. I cried for days and just was so low. The lymhadema nurse was fantastic and measured me for a sleeve and glove and I remember saying, Oh I'm not wearing one of those. My arm was 18% bigger than the other. Anyway I was very good, I wore the sleeve and glove as much as possible, from as soon as I woke up to when I went to bed. But if I went out or met friends I would take it off and leave in the car and put on again when going home.
I have a flesh coloured and black one. I also have a pink and white spotted one fron Lymhadivas. I am very carefully, I don,t carry anything heavy in my right hand, push door or trolleys with it. I don't let it hang down. I don't do any exercises but try and look after it. It does ache a bit, but the good thing is that my arm has come right down and is the same size as the other arm now. I now don't have to wear the sleeve and glove every day. I wear them when doing housework etc but not every day.
I just wanted to tell you how dreadful I felt and it hasn't been as bad though I do realise that it is for life, and I will always have to look after it.

Lacuna
Member

Re: Might I have lymphoedema?

Thank you so much for the link moorcow, the exercises look better than the ones I have been doing, so I will give them a go.

I am glad you are still able to do the things that you enjoy Quail, and I'm also really glad I'm not the only person who feels this way, selfish though that is. If I need a sleeve/gauntlet I will definitely look to buy from lymphedivas if they do something suitable for the compression I need, as they have some nice things. The dreaded beige sleeve is what I don't want.

I hope your lymphodoema continues to behave for the foreseeable future sandra44, sorry you got it after having so few nodes removed, it seems very unfair.

Rattles - I think black is a better choice than beige, particularly for the winter. Might be a bit hot in summer though.

I am still waiting for an appointment, I might chase them tomorrow. The swelling is not going down and the pain is starting to spread down my arm. Do people with lymphoedema generally have to wear compression garments every day, or are there cases where it can be managed without the garment?

Rattles
Member

Re: Might I have lymphoedema?

I have come back for a moan as I am feeling sorry for myself. As I said, I was really pleased as my arm has gone down after MLD and bandaging, but I have just tried to go clothes shopping and really found it hard to find things that would go over my arm due to the swelling in it (even though I thought it had gone down). It was a very disheartening experience- any tips or advice?
Also, if you had the choice between black and american tan glove and arm piece, what would you think is the most practical/fashionable?!!!
Re exercise- I used to be a keen cyclist. Will I be able to manage it again do you think?
Thank you. Rattles

sandra44
Member

Re: Might I have lymphoedema?

Hi there, I am another of the very annoyed women that got lymphoedema...I had just about got my head round the cancer milarky then wham got diagnosed with this, well, eventually, after not being taken seriously and also having had only four nodes taken out.

I was more annoyed that I hadn't been given enough info about the possibility of getting it, as at least then I could have been half prepared for what it entails. I do think it is very individual, not a case of one size (of hideous sleeve) fits all.....

However, I am lucky in that after an initial bad time of it ,my arm and boob seem to be well behaved at the moment, it comes and goes but I do live in fear of my arm swelling to elephant proportions never to go back down again...can't spend my life worrying about what ifs though.... I took up running my own homebaking business after diagnosis and manage fine putting up a market stall twice a week and oooh I shouldn't really be lifting heavy baskets of cakes but I do what I can at the mo and get help where I can. Do highly recommend the support given by lymphoedema nurses, mine has been great. Good luck, with it all , we are all here to help and share experiences.

Sandra x

moorcow
Member

Re: Might I have lymphoedema?

Hi again,
here is the link, the exercises are towards the end of the doc - love your post Quail,

http://www.thehaven.org.uk/sites/default/files/EJ%20Lymph%20at%20Risk1.pdf

all the best N

Quail
Member

Re: Might I have lymphoedema?

This anger/bitterness/dispair that you are feeling is REALLY normal, Lacuna. In some respects figuring out I had lymphoedema was the worst part of this whole bc nightmare. It suddenly brings it all home how completely messed up your life has been by the bc diagnosis, and makes it all too plain that there IS no "moving on" in a really cheerful, now I'm normal again sort of way. As you can hear, I can still get to that angry place. But, these feelings do recede, you will get to a point where you are just dealing with it, and it really is (at least most of the time) NOT a big deal. And I've been surprised at how few people have asked why I have this armsleeve/gauntlet on--and how used I am to wearing it; believe me, one is never too old for vanity! You can get black ones, that look less medical, and a UK company is now selling Lymphedivas armsleeves and gloves which are patterned (if expensive).
For most of us, we can learn how to continue doing the things we love. I may have to pay attention when I knit or needlepoint, and I'm darned if I'm going to stop gardening--I know women who run/do yoga/canoe/hike, even lift weights (!) with lymphoedema.
Anyway, to a big extent, I think you have to process this yourself, so my blather won't help, but I hope that all of our reassurances that lymphoedema is not as horrifying as it first presents can sink in and give you a little ray of optimism through the swelling.
Do look for the Haven exercises on their website, they seem to help.
HUGS XXX

moorcow
Member

Re: Might I have lymphoedema?

Hi there, I had a scare after a mosquito bite in Sept and did the exercises as shown in Haven , Leeds leaflet - its hard to find on their website but it is there i promise - they worked really well -
so perhaps try them, they are meant to stimulate body to find new routes for lymphatic drainage..
i agree SO much about how little advice we are given re how to care for ourselves re lymphodema prevention
....build up slowly seems to be the thing - but you didn't cause it my friend you really didn't. all the best Nicola

Lacuna
Member

Re: Might I have lymphoedema?

Thank you to everyone for the responses.

I am sorry you got lymphoedema after having only four nodes removed Viv, that seems very unlucky. You are having to wait a while for your sleeve to be fitted though Jan 28 seems a way away.

Thank you for the advice Quail, I will follow all of that. You seem to be managing well. There is no sign of the swelling going down yet, I think my fingers might be even more swollen.

I'm glad that your swelling has started to reduce Rattles, I will do the stroking like you suggest. Like you, I don't want to have to wear a glove, but at the moment most of the swelling seems to be in my hand and fingers.

I am trying to be mature about this, but I really just don't want it, and seem to be having a harder time with this than my cancer diagnosis even though I haven't actually been diagnosed with lymphoedema yet. But I am certain that is what it is. I am also worried about the effect on my hobbies and activities, and having to explain to people why I am wearing a glove. I just wanted to start moving on at this point, and this has set me back. I know some people have to deal with far worse, but I feel quite angry and upset.

Rattles
Member

Re: Might I have lymphoedema?

Sorry you might have lymphodema Lacuna. Some lovely, positive advice already from Vivi and Quail.
I developed lymphodema in my right hand and forearm in October. I was very upset by the extent of the swelling. From what I can make out, there is alot of variation in severity. Mine got so bad that the skin split in the fingers.
While waiting for an appointment, I put my arm on a cushion so it was raised and also stroked my arm and hand, gentle strokes, my therapist says to imagine there are tiny champagne bubbles just under the skin and the strokes are moving them along back towards the armpit. While waiting for my appoitment the swelling worsened and I was in a right state esp as it really impacted on my ability to do everyday tasks. I am now 2 weeks into a treatment of MLD and bandaging. The swelling has improved loads. Its not gone away but its soooooo much better.
Like you, am very worried that I will have to wear not only a sleeve, but a glove. Its not a good look even though at 42 a bit older than you! I think its also a constant reminder that I have had breast cancer. So, while I hope to be where Quail is, I'm not there yet!
There is another thread in this area which also has some really good advice. I got some good info from the LSN, although I have to say that the info seemed directed at older ladies (no offence meant - please!!). The have do a really good DVD.
Hope this helps a bit. Feel free to ask questions.
Rattles x

Quail
Member

Re: Might I have lymphoedema?

Hi Lacuna (great name, by the way),
Some Yoga excercises (downward dog-type) can exacerbate lymphoedema, but it won't have "caused" it--that's down to our lymph systems packing it in due to the surgery. I'm with Viv, it's really easy to panic, I certainly did, but in reality it's not the end of the world. Do read the advice sheets, they are really helpful, and also it is helpful to feel like you CAN do things to help. Try to keep your arm elevated when you're not using it--not over your head, but not hanging loose at your side--on the arm of a chair or on a pillow. Drink water--I don't always follow my own advice, but drinking and deep breathing (you'll know how to do that from yoga) do help keep the lymph moving. If you have swelling, it takes awhile to go down, so don't freak out if it doesn't go away by itself in the next couple of weeks. And DO (this is important) read about cellulitis. If your arm or hand gets red and/or hot, and you feel fluey get to the gp or A&E, because cellulitis can spread very quickly.
But, let me say it again: it is easy to think it's the end of the world when you realise you have lymphoedema. Don't get too freaked out, it is usually quite manageable.

vivtwins1
Member

Re: Might I have lymphoedema?

Hi Lacuna!
Sorry to hear you are having difficulties. I have been diagnosed with mild lymphoedema in my right arm and I only had 4 nodes removed. I couldn't believe it as the chances of me getting it were quite small. However, I got an appt with the clinic and they scanned my arm and said that it wasn't too severe and to be careful with it!

The best thing you can do at the moment is look after your arm/hand, try not to do too much repeated action above your head (advice I was given). I am going back on 28th January to have my sleeve fitted but they didn't seem too concerned. I also have a medical alert card.

Read the advice page given by Louise. Try not to panic, these things are manageable!

Take care
Viv xxx
Louise_BCC
Member

Re: Might I have lymphoedema?

Hi Lacuna

While you are waiting for others to reply, I thought you might find it helpful to read a couple of our factsheets which can ge downloaded here:

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/reducing-risk-lymphoedema-bc...

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/living-lymphoedema-after-bre...

Kind regards.

Louise, Facilitator

Lacuna
Member

Might I have lymphoedema?

I am worried I have been stupid and might have caused lymphoedema. I had surgery with ANC in February of this year. I am trying to get back into exercising and just over a week ago I was doing some yoga. The next day I noticed some pain in along the back of my right hand (the surgery side), mainly when I washed my hands or put moisturiser on. Five days ago I noticed that my hand is swollen, particularly my little finger and the finger next to it, which are much bigger than normal in size, but also my other fingers and the back of my hand. I measured around my palm and it is about 1.5cm bigger than the palm on my left hand. My hand also aches a bit and I still have the pain. I have spoken to my BCN and she said she will refer me to the lymphoedema clinic, but I haven't heard anything yet.

Does it sound like I might have lymphoedema? I am worried that I overdid the yoga and put too much weight on my hand. I wasn't really given much information about what is okay or not okay to do long-term and thought that I would be alright but now I think I did the wrong thing. Other than the cancer returning, lymphoedema is what I worry about the most and I feel really annoyed with myself that I might have done this to myself by not being more careful. I know I am being vain, but I don't want to have a wear a glove and/or sleeve daily for the rest of my life, I am 33 and still care quite a lot about my appearance. I have also read that lymphoedema in the hand is the most debilitating and difficult to treat which makes me feel even worse. I know that getting treatment quickly is the most important thing but I was told an appointment could take several weeks. I am doing my post-surgery exercises and trying not to strain my hand in any way and I have a good skin care routine, but is there anything else I can do in the meantime to prevent the swelling getting worse in case it is lymphoedema?

Many thanks for your help.